Wednesday, 23 December 2015

Hello everyone! Sorry I haven’t written any posts or had any PHight Fridays in a while. I
hope to have more PHighter Friday stories in the New Year to share with all of
you. If you are interested in writing for a PHighter Friday please send me a
shout at phightagaisntph@gmail.com.
From there I would be happy to send some examples, along with various questions
to help with the writing process.As the holidays approach I thought it might be nice to do a little post about
how to prepare for the holidays. I know that although the holidays are supposed
to be a happy to time, sometimes the holidays can be difficult for a
handful of reasons. I was diagnosed with Pulmonary Hypertension a few days before Christmas, and I had
my RHT on Christmas Eve. Needles to say I feel my emotional roller coaster go
up and down a lot during the holidays. The holidays can also be physically
demanding (even for people without a chronic or life-threatening illness!)Here are four suggestions to help prepare you for the holidays;

1. Get a Good Night’s Sleep

Many people with PH (and other conditions) can feel worn out and tired more
easily than the average bear. The holidays can be an exciting but also a very busy
time. It is important to try and reserve your energy wisely. The first step in keeping a good amount of ‘gas in your tank’ would be to get a
good night’s sleep before an event, like New Years or any other holiday gatherings. Here are a few quick tips
to getting better sleep;-To ensure you have a goodnight’s I would recommend turning off electronics
(like your phone) 20 minutes to an hour before you want to sleep. The light
omitted from many electronics can trick your brain into thinking it is daytime,
thus making it difficult to fall asleep. - Try to do something relaxing 20 minutes before bed. This will help clear your
mind of unnecessary clutter and thoughts. What do you find relaxing? Some
people prefer doing a bedtime/relaxing yoga routine before bed (you can find some for
free on Youtube.com and Pinterest.) There are also various
meditations and soothing noises for sleep that can help you drift off. Here
is a list of some of the best-rated apps to help with sleep.- Scents can be very soothing, which is perfect for helping you feel relaxed
enough to get a good night’s sleep. Lavender is one of the mostly largely
accepted scents associated with relaxing and a good night’s sleep. If aromatherapy and diffusers aren’t your thing I would highly recommend Badger
Balm’s Sleep Balm. It is made out of essential oils, but comes in a wax rub
form instead of a liquid. It isn’t messy, it is very easy to use, and it only
involves one step. I rub a little bit on my temples when I hop into bed. I
absolutely love the smell of lavender and bergamot in the Sleep Balm. (I am
getting sleepy just thinking of it.)- Read a few pages or a small chapter of a good book before bed.- Don’t be afraid to nap for 20-40 minutes the day of an important outing!

2. Take Care of Yourself

Preparing for Christmas Eve by slothing around

Remember to take care of yourself. If you are not feeling up to something, ask
if you can reschedule. Chances are everyone would feel happier knowing that you
felt well enough to enjoy something more than you would have if you were tired, in pain, not feeling well etc. I know that many of us struggle with the associated risk of ‘cancelling’ plans but sometimes things
are beyond our control. This is why it is so important to put yourself first.
Good friends and family will understand. They would want you to tell them how
you are really feel and what would be best for your situation. Don’t hesitate to ask for help, or to let others know how to make a situation
easier for you. Don’t be afraid to need to relax before, during or after an
event. Don’t be afraid to take a day to recoup after a gathering. Take a sloth
day. Stay in comfy and cozy clothes, cuddle up with a cup of tea and your
favorite human, or animal (real or stuffed.) Have a bath, marathon a TV show,
read a good book, draw, surf the web, meditate. Just relax if you need to (and
don’t feel guilty about it!) PH or not, everyone is entitled to a good
sloth day after dealing with all the business that the holidays can bring.

3. Eat Right

One year in high school my friend Aileen gave up sweets for lent. I vividly
remember saying “what good is life without dessert?” A little dramatic, I know.
I certainly eat better than I did in high school (I am on a gluten-free diet, and try to eat mostly healthy goodies,) but I maintain the idea for
myself that everyone needs a good treat everyone once in a while. My only advice
is to pick and choose your dessert wisely. Make sure to indulge in something
that you will really enjoy. At the end of the day, I don’t think I will regret any of the cupcakes that I
have eaten. I thought about it more, I won't. My favorite special treat are the cupcakes from Kelly’s Bake Shoppe in
Burlington, Ontario. My poor boyfriend has to drive me all the way to Kelly’s on
the regular. The cupcakes at Kelly’s (which I swear by) are not only
gluten-free, but also vegan and made in a nut free facility. Kelly’s also uses
whole ingredients along with organic and fair-trade ingredients. Even better
than that, their cupcakes (along with donuts, cookies, muffins...) taste
amazing. My boyfriend is a little on the picky side when it comes to my venture
into healthier food, and he loves them! They are unlike any vegan/gluten-free
cupcake you have probably ever tried. They are not good for
‘gluten free’ or ‘vegan’ cupcakes (which can be dry, or have a funny texture.) They are just good. Okay-
I rambled too long on this one. I really like Kelly’s. I think I should go
before New Years to get some cupcakes for my celebrations.

Enjoying a cupcake at Kelly's

*Fun tip: their cupcakes freeze very well. Freeze some and keep them on stand
by for a rainy day. I always treat myself to one after a PH appointment.A very serious issue in terms of PH and dietary needs is maintaining a low sodium diet.
People with PH are advised to have a low sodium diet because salt can cause
water retention. This is a problem for people with PH because the volume of
blood your heart has to pump increases when too much water is stored in your
tissue. Hearts with PH are generally working overtime, which is why a low sodium diet is so important. If you are going over for dinner at someone's house, make sure to let them
know about your low sodium diet. I know that this is a pain the butt, so I will
often ask if I should bring a meal for myself, or come over for dessert. You
can always eat a meal before going over and have some salad with low/no sodium
dressing while at your family or friend’s house. This way you’re not missing
out on any bonding over dinner. Don't be afraid to bring your own condiments or whatever you need to ensure you have a meal that is safe for you.If you are going out to a restaurant for dinner, be sure to let your server
know that you cannot have salt on your meal. When I go out to eat I explain that I
cannot have salt due to a very serious heart issue. I have to say this because
I look healthy, and because of this, servers and chefs have not always taken my request seriously. This has resulted in a few episodes where it feels as if my heart is trying to self destruct. Not fun. Be sure to ask what the chef would recommend for your request. Some
places will be happy to make something off menu for you. Your best bet is to get a protein that isn’t seasoned a head of time, along with veggies. Ask
for pre-made sauces with salt to be served on the side. This way you will have better
portion control for how much salt you do have. Salt is hidden in tons of things from butter to broth. If you are making your
own meal, look for low to no sodium products. Stay clear of recipes that ask
you to use a lot pre-packaged items. An example of this would be a curry recipe
that calls for you to use a pre-made jar of curry sauce for butter chicken.
Look for a recipe that will actually ask you and instruct you on how to make
the curry sauce. You can alter any
recipe as needed. Omit the salt completely and add low to no sodium products
that the recipe calls for.

If you find that your meal is a little bland Mrs. Dash offers salt free
seasonings and marinades. (Southwest is my favorite seasoning. I put it on corn or
potatoes with a bit of organic butter.) Another company called Mr. Spice creates organic, no
sodium marinade and sauce. Their sauces are so flavorful you probably
wouldn’t guess that they don't have sodium! I was very happy to find their
products; they have been a total life saver for me. (Some of my favorites from
Mr. Spice are the Honey BQQ sauce, and the Hot Wing sauce.)

4. Have Fun

Sammy posing in his Christmassweater.

This is one of the most important steps-have fun this holiday season! As I
have mentioned before, I know how hard the holidays can be when you have
something as serious as PH. It affects everyone so differently. We
all have different abilities, and perhaps issues. This is my third Christmas since
being diagnosed, and I am looking forward to (hopefully) having my best
Christmas and New Years since diagnosis. I know that I am very fortunate to
improve the amount that I have, and to have the energy level that I have.
Things aren’t perfect, and things can be really hard- but I want to take
advantage of good things when and while I can.I have learned through this experience how important it is to utilize my good days. I’m going to
say yes to opportunities that I feel well enough for, and want to do. I will also say no thanks to anything that sounds like it might be too physically or emotionally
demanding (or that I just don’t want to.) Remember, it is okay to take care of
yourself. Sometimes that means saying no to some invites. Your true
friends will understand if you explain the situation to them. If the moment approaches and you are feeling up for it, celebrate! Have fun,
laugh, take pictures and make good memories. If you can’t stay up till mid-night
on New Years have your own count down. Celebrate in your comfy clothes, or dress
up. Stay in or go out. Do whatever feels best for you, and will bring you the most
joy. Kiss your dog, partner, teddy bear or even a consenting stranger at a
party for the countdown. Wishing you all a very safe and happy 2016.Serena xoSee some of my holiday fun on Instagram

Tuesday, 15 December 2015

The website xojane asked me to do a re-write of an article that I previously wrote here (previous article can be found here 'Why I Shouldn't Get Pregnant.') xojane posts a lot of real stories from other young women facing a variety of different issues. Some are fairly light hearted, others are more serious. If you haven't been there before, check out their website. I have even found a few other articles by other young women with Pulmonary Hypertension.

I would like to add that xojane changed my title to be a real bummer. They also took the liberty of adding some pretty lame tags to my entry like 'death.'Here is a preview of the article:

"December 21, 2013 is the day that forever changed the course of my life.On
this day, I was told that I had Pulmonary Hypertension. I had never
heard of this disease before, and chances are you haven’t heard of it
either because it is fairly rare.

The news I
received was bad, very bad. In addition to being rare, PH is also
progressive, incurable and fatal. The doctor came into the room and
announced that I have 5, maybe 10, years to live. I was only 25.

I
looked out the window of the doctor’s office and saw many of my plans
for the future floating away. I was immediately advised against
pregnancy because of the high mortality rate associated with it for
women with PH. I hadn’t even had time to process all my other losses.

In
simple medical terms, Pulmonary Hypertension is considered a
contraindication to pregnancy. Pregnancy for women with PH increases the
risk of death for both the mother and child."Please read the rest here

Friday, 30 October 2015

Hello, my name is Adam Kingz. Here's a little back
story on my life so far. I was diagnosed with Primary Pulmonary
Hypertension when I was about 13 years old. The doctors said they think I
had it for about 2 years before finding out. The testing was long and
doctors had no idea what it could have been.
One of the main reasons I started going to the doctors was because I was
passing out in gym class all the time.

The day I was diagnosed I was sent to sick kids hospital in Toronto. I
pretty much lived in the hospital after that. It was hard being 12 and
having PH. As my friends played I sat. They continued in school and even
that was to much for me. I was in a wheel chair and on oxygen. The
oxygen was a pain to have with me, plus being stuck to the wall sucked.
Then they started me on flowlan. I was the first child in Ontario on it.
So it was a little nerve raking. The fact that it had to stay cold and
be changed daily was quite taxing on my family. I also developed an
allergy to all tapes so they could only use gauze on me.

My health
continued to decline and I was able to do less and less.
I got the call for my transplant August 23. I was now 13. It was 3:00 in
the morning and I was whisked away to sick kids. (One of the few times I
was home. Of course).
After my surgery things became amazing! I could breath, run, play! It
was truly amazing! My life was no longer on pause. It aloud me to grow
up! I got to meet my beautiful wife and become a father to her daughter.
I was only taking anti rejection medication and that wasn't to bad.
Besides the fat face from prednisone. After 13 amazing years I developed a cough. After a few tests the
doctors found out that I had chronic rejection. This was heart breaking
and terrifying! I was so happy and it was all going to disappear right
through my fingers. But then the doctor gave me a glimmer of hope. I was
told they do re-transplants. It was scary but it was something. I could
keep my family, my life wasn't over. Shortly after my now wife and I
decided to try and have a child. I was already a father to a little girl
that may have not been mine from blood but she was and is a huge light
in my life. So why stop living? We were blessed with a son!!! All though
out my wife's pregnancy I got worse. Everyday it was getting harder and
harder to breath. When I saw him I forgot about it all. He was perfect.
And just one more reason I had to survive!

My wife and I also got married in this time. To see how beautiful she
was walking down the isle was incredible! She truly is my other half.
My health was getting incredibly bad. Well you wait for your transplant
you have to do phsyo. It's to keep you as strong as possible. That way
you recover fast after transplant. It's just some light weights,
stretching and walking on a treadmill. Well by the end I was barely
doing 5 minutes on the treadmill. I could barley walk up 2 or 3 steps. I
used a walker and refused a wheelchair. I never wanted to go back in
one again. My breathing was so bad I was burning so many calories I was
down to 105lbs. That's coming from about 210lbs. Every breath I took
reminded me of having PH again. It hurt so bad. Every minute of every
day it hurt.
After 1 false call the day finally came. I got my lungs! 12 days in the
hospital and I got to go home. I pushed hard and recovered fast! Now as I
sit here healthy and being able to breath once again I will never
forget how lucky I am. I love my life! I am extremely thankful to both
my donors. Organ donation is incredible! I get to be a dad, a husband,
son and friend.

Wednesday, 28 October 2015

What comes to mind when you think of the 'S' word? Is it a four letter word, or is it an eight letter word? The word I am referring to isn't a bad word (although it felt like one for a while.) It felt like word I wasn't allowed to use. I thought this word was off limits for me because I haven't "beaten" Pulmonary Hypertension, or because I haven't lived with the disease for over seven years.

The word I am talking about is survivor.

People who have lived with Pulmonary Hypertension for over seven years are considered a 'long-term survivor.' For those of you not living with PH, I can't even begin to explain how daunting it is to know that if I make it to my 33rd birthday I will be considered a 'long-term survivor.' For those of you who have PH, you already know how this pit in your stomach feels. I have only ever seen the word 'survivor' attached to the phrase 'long-term' when referring to PH. As I have mentioned before, there are not any treatments available that provide a chance of remission or a cure for PH.

When I was diagnosed the specialists came into the room and slapped an expiration date on me. He said I have " about 5 to 10 years." I asked "5 to 10 years for what?" Dying clearly wasn't on my mind. Sure, I Googled the disease before I went to my appointment, but me? Fatal disease? Part of me thought that couldn't possibly happen to me. But I guess it did happen to me, and it is happening to me. Most of us do not get the chance to beat the disease, and are therefore not often considered a 'survivor' unless we beat that crummy expiration date that doctors try to pin on us.

My question is why not?Why are we not considered survivors the day we are diagnosed?

How do I go from a doctor's appointment where they discuss putting me on the transplant list as 'insurance,' and try to maintain a relatively normal social life? What do I have in common with my peers? Suddenly we are forced to find the fine line between living and dying, and balance it in a modern world. Pay your bills. Take your pills. Don't have an emotional breakdown in public. (Although, it is totally okay to cry in public. I have seen my fair share of people cry at night clubs before I got sick, and it was mostly over guys and french fries.)

How do you love something when you feel like it betrayed you? For me, it became incredibly hard to love myself after diagnosis. After diagnosis we have to try and learn to live with ourselves (and our diagnosis) the best we can. Suddenly our bodies are different and we rely on medication. The most effective medications have horrible side effects, are quite visible, and require that the medication is administrated 24 hours a day, everyday. You also never get a break from the equipment, or a vacation from being sick. Some of us also require supplementary oxygen, which comes with its own separate handful of problems. (Like "do I have enough oxygen to go shopping with my friends? What happens if the power goes out?") Suddenly our bodies are different, along with our lives and what we thought would be our future. I remember feeling as if I could physically feel my body betraying me when I first diagnosed. Worse than that, I felt like everyone could see my body crumbling away. It was hard to love myself, or believe that anyone else could love me. I felt invaluable because my body, for whatever reason, decided to self destruct. After diagnosis, I feel like many of us question our self worth and face self-esteem issues.

We have to try learn to accept, and hopefully love our bodies, despite all the things we might require to stay alive. I learned that I could not love others if I did not love myself. (I know how cliche that sounds, but there is a reason so many people offer this advice.) While I still struggle with trying to accept all the changes in my life, I am also less hard on myself. Superficial things don't hold much merit anymore. Sometimes you just have to accept things for the way they are. That way you can move on and really enjoy what is happening in front of you in this very moment. My boyfriend told me a few months ago that I wasn't affectionate anymore. Truth is, I hadn't been affectionate since after my diagnosis. I was scared he could feel my body betraying me when we hugged. Could he see the expiration date stamped on my body? I also had a hard time really connecting to him. I was tuned out a lot. I was in my own little world full of fear and depression. I still have those days, but I try to focus on living in the moment. I was so closed off, my boyfriend wasn't sure I loved him anymore. I realized that I had shut him out because I was so scared of him leaving me because of my diagnosis. I felt so unlovable, and it was easier to shut him out so I couldn't get hurt in case he decided he couldn't be with me anymore. I learned that it wasn't my diagnosis that was pushing him away, it was me.

Not only have I battled physical obstacles since diagnosis, but emotional. I know that I am not the same person anymore, and I doubt anyone who goes through this experience could be. In fact, I think the core people in my life have changed as a result of my diagnosis as well. They say death changes you. Well, what do you think happens when you get an invitation to the Grim Reaper's party instead of the standard surprise party? Obviously you have time to think about a party that you weren't really planning to attend yet (or even prepared to go to.) This is what I mean about the fine line between living and dying. We are constantly trying to balance both, and still be functional. "Did I leave the stove on? I need to pick up dog food. Should I make a living will?" The last thought shouldn't be something I have to worry about, but it is.

When I was first diagnosed I noticed how easy it was to stay in bed, not change out of my pajamas, and make excuses not to do things with the people that I love. It was easier to stay in bed, be alone and wallow with my thoughts. Once I started to stabilize I was still avoiding doing things that I would genuinely
enjoy. I had this idea in my head that I had to wait for things better. By better, I didn't just mean my health stabilizing. I meant I was waiting for some kind of miracle to make the PH go away. I felt like I couldn't enjoy life unless I was perfectly healthy. I have started to accept my health for what it is (although it is challenging.) When I was diagnosed I was very sick. I was diagnosed somewhere between a stage 3 and stage 4. There is no stage 5. As you can imagine I was in rough shape. I went to bed each night terrified I would die in my sleep because of how sick I was. My heart was severely enlarged. Even with oxygen walking a foot to the bathroom was a major challenge. Because I was so sick, I am starting to really appreciate how far I have come. It isn't perfect, and of course I wish I could be better, but where I am now is so much better than where I was when I was first diagnosed and I am fortunate it for that. I've slowly started to realize that I am doing okay, and that there is no better time than now to start living. I am not sure what my health will be like in the future, so I can't waste anymore time waiting for things to get better before I start living again.

This might sound a little strange, but I don't identify with the colour periwinkle or zebras (things affiliated with PH awareness.) I consider myself more of a unicorn, and I like the colour seafoam. I also don't identify with the word 'patient.' I have had to correct people from referring to me as one because my name is Serena and I am so much more than my diagnosis. (Unless I am in the hospital, I am not a patient.) It took me a while to come to terms with the word 'survivor,' and perhaps you don't feel comfortable referring to yourself as one. Through this experience I have come to realize that we are constantly learning in life, regardless of conditions. After my diagnosis I had to do a lot of re-learning. I am re-learning to live again. I am learning how to live a different life. The lessons that I have learned are things that can not be taught, but only gained through experiences (which are sometimes very painful.) What I have learned is that if you can continue to live, learn and love despite your diagnosis, which could very easily make a person hard, you are a survivor. Even if the word survivor is not a word that you are comfortable with, please do not deny yourself the love and recognition that you deserve. If you continue to live, love and even laugh despite everything; you are at the very least a bad ass.

Friday, 23 October 2015

When it comes to Pulmonary Hypertension, I am the boogie
man.I am literally living the life that
everyone is afraid of.Think PH
diagnosis prior to the new medications that came out in the 1990’s, the
medications “that work,” as they are so often called.To put it bluntly, when all of us were told
at diagnosis not to google PH because of all of the horror stories you would
find on the internet, they were essentially telling you to avoid people like
me.

However, I believe that my story is worth telling.I have developed a way of living with my
disease (and that’s with my disease,
not in spite of my disease) that
allows me to have a completely satisfying, present-moment oriented life without
regret, remorse, or wishing things were different.

I was surprised diagnosed with PH January 8th
2014.After about six months of
increasing difficulty breathing, I finally went in to see a pulmonologist when
I could no longer walk the six blocks to my regular bus stop without having to
stop multiple times to steady my breathing.Because my symptoms were so severe at my first appointment, I was
quickly scheduled for a series of escalating tests culminating in a lung
biopsy.The lung biopsy confirmed the
PH, as well as a secondary lung disease thought to be completely independent
from my PH.I woke up from the surgery
on oxygen and have been on oxygen 24/7 ever since then.My first right heart cath confirmed what my
echo had estimated, that my pressures were in the 100’s and that my heart was significantly
enlarged from all of the extra effort it has to exert.I was promptly started on Sildenafil and
daily diuretics, and when that didn’t work they increased my diuretics and
added Letaris, and when that didn’t work they increased my diuretics and added
inhaled Tyvaso, and when that didn’t work they increased my diuretics and
switched me from Tyvaso to Sub Q Remodulin, and when that landed me in a three
week ICU stay in which I was given a 0% chance of surviving, they increased my
diuretics and switched me from Sub Q Remodulin to IV Veletri
(epoprostinil).Since being switched to
IV Veletri this past January, I have survived one serious line infection, a
blood clot, multiple septic emboli in my lungs, and a six hour hemorrhaging
episode after my new line was placed.I
have spent a total of 35 days in the ICU, my walking radius has decreased to
within the confines of my studio apartment, and I am currently on 10-15 liters
per minute of supplemental oxygen.

I am also having the highest quality of life that I have
ever experienced.

Many years before my
diagnosis I began learning about and practicing Buddhist mindfulness.Since I had been raised Jewish this was not
much of a stretch.There are countless
numbers of us “Jew-Bu’s” walking around!In a journal entry from 2009 I wrote to myself “When I look in the
mirror I can either believe ‘my hair is brown,’ or I can believe ‘I’m having a
thought that my hair is brown’.”Both
thoughts are true, but how will thinking one versus the other impact me in my
daily life?Let’s say that my mind
automatically goes to the thought “my hair is brown.” What if I don’t want to
have brown hair?What if I prefer
red?In fact, my grandmother had red
hair.Why should I have been born with
brown hair?It’s not fair!I should be able to change my hair color,
maybe I should get some dye.Of course,
my hair being so dark I would have to bleach it first.Again, not fair!Other people don’t have to do that so why
should I?

As you can see, suddenly from the thought “I have brown
hair,” I have created a story about the value of having brown hair, and then I
began emotionally reacting to my story .The negative feelings I experienced were not actually caused by having
brown hair, but because of the meaning I had invented and then assigned to
it.Suddenly, I am lost in
suffering.However, when instead I have
the thought “I’m having a thought that I have brown hair,” I can instead notice
the natural human instinct to want to categorize and label, and I can lovingly
allow those thoughts to disperse naturally, like leaves being carried away in a
river current.In fact, because I am not
caught in a self-perpetuated story that things should be different, I am free to enjoy what actually is. For example, the naturally occurring
red highlights that do appear in my hair when the sunlight hits it just right.

My wife and I at our wedding reception

To me being terminally ill is like this.I get to have a very different quality of
life when I separate out the story which I attach to a thought from the actual
thought itself.It’s not fair, this shouldn’t
be happening to me, and nobody understands are all examples of thought patterns
that create their own suffering in my life.If instead I’m able to think “I’ m having a thought that this isn’t
fair,” I am more likely to be able to approach myself with loving
kindness.I can use that thought as a
reminder to take extra good care of myself in that moment through reaching out
to a friend, taking a bubble bath, or putting on my favorite fleece pajama
pants.And because I am staying fully in
the present moment and not spiraling out in self created story, I am fully
present to notice, receive, and be soothed by the self-nurturing that I am
providing to myself.

I have long subscribed to the alterna-healing world, and I
have continued to use many complimentary forms of healing alongside my traditional
allopathic PH care.Among my regular
tool kit I have used the anti-inflammation diet, a brief foray into juicing
medical grade marijuana (legal in my state), hand making medicinal bone broths
and eating traditional organ meats, learning to both give and receive Reiki,
five element acupuncture, chiropractic care, yoga nidra, prayer, meditation,
guided imagery, and specialized breathing exercises.I believe in the alterna-care world very
much, but here is another place where I have to be very careful not to create
story (and therefore suffering).I
receive acupuncture, for example, because I like the relationship with my body
that it helps to foster and I have also noticed that many times it can alter my
experience of my symptoms.However, if I
start to become attached to the thought that acupuncture should cure me, I block myself off from the healing that is available to me, and is happening on a daily basis.

I mentioned earlier that I am currently having the highest
quality of life I have ever experienced.And I mean it, literally.This
last January, as I lay in my ICU bed in heart failure and unable to move, talk
coherently, or care for any of my basic needs independently, the people that I
had known and loved throughout my life dropped everything to take up residency
in my hospital room.Friends and family,
and sometimes even near strangers, literally put their lives on hold to make
sure that I was never alone.My best-friend-since-the-sixth-grade even
private chartered a plane with her husband to come out to visit me.For three weeks, people sang me songs,
massaged my aching body, slept in the hospital bed with me, and told me over
and over again what it had meant to them to have me in their lives.We said our goodbye’s, but with so little
time left and the perception of nothing to lose, we metaphorically stripped
down bare and truly got to show our souls to each other.The joy of life was palpable to all during
this time, and pure unencumbered love was the only language that anyone
spoke.Suddenly, it became clear to
everyone present what it truly means to be alive (hint: it has nothing to do
with if you can work, how much money you have, or what your body looks
like).My sisters decorated the ICU
walls with colorful and beautiful artwork for me to look at.We kept a mini fridge in my room filled with
delectable taste sensations for when I could eat.A good friend rented a button making machine
and hand-made buttons for visitors and medical staff alike celebrating my
life.I hosted and judged a dance
competition between my sisters, a close friend, and medical staff.Although I was dying I was also, for the
first time in my life, fully alive.Far
from feeling burdened, the close friends and family who walked this path with
me were also woken up to the beauty and splendor of life.Many of them feel permanently altered for the
better from that experience.

Wedding day!

Truth be told, I started dating the woman who would become
my wife during that ICU stay, proving to myself once and for all that my self
created story (no one will ever love me, I am a burden on others, who will want
me now), is nothing more than self created story which only serves to create
needless suffering. The night we confessed
our love to each other we both thought was going to be my last night on
earth.Turns out we were wrong.In what could only be described as a Disney princess
fairy-tale story come to real life, I was literally saved by true love’s
kiss.Which is to say, the very morning
after we confessed our love, with no medical explanation at all, I suddenly
reversed course, came out of heart failure and could sit up and walk
again.My wife and I are madly in love
with each other, and I have been sick with PH the entire time that she has
known me.Having lost her own father to
lung disease nine years ago, she knew fully well what she was signing up
for.She does not feel that she is
missing out on anything because I am sick, and I know with absolute confidence
that no one else on this earth could do a better job of loving her than I
do.Our joy at being together fills
every room we enter.In the hospital the
nursing staff has nicknamed us “the love birds” because every time that I am
hospitalized, and I am hospitalized quite a bit, she spends each night sleeping
in the narrow hospital bed cuddled alongside me.She loves me enough to tell me that if it
ever becomes too hard to keep on going, she will understand if I need to leave
my physical body.And she loves me
enough to support me through the grotesquely rigorous and often unpleasant lung
transplant process I am currently engaged in.

Two books have helped me considerably on my journey towards
peace and freedom with my illness, and I would recommend them without
reservation to anyone who is either sick or knows someone who is sick. The first is called How To Be Sick: A
Buddhist-inspired guide for the chronically ill and their caregivers, written
by Toni Bernhard.And the second book is
simply titled Fear, written by Zen Buddhist monk Thich Nhat Hanh.Both books have helped me shift my thoughts
so that I when things are hard, as they often are, I experience the necessary and
expected pain of being a human being who is mortal, but not the suffering
caused by own self created story.

I hope that my orientation towards my disease can be helpful
to all of us in the PH family, whether you have six months or twenty years to
live.Whether the new drugs “work” for
you, or they do not. Whether you are
working a full time job, or just working on being able to get out of bed in the
morning.Regardless of your
circumstance, there is an equal amount of peace and freedom to be found for
each of us.

Carmel is currently raising money for her lung transplant. Please visit her fundraising page here to learn more on how to help, donate or share her fundraising page.

Friday, 16 October 2015

Hello there guys!My
name is Mariza and I am 34 years old. I was diagnosed with CTEPH (Chronic
Thromboembolic Pulmonary Hypertension) about a year and a half ago.I cannot quite pinpoint when my symptoms
really started because I had trouble with breathing since high school. I was told I had allergy induced asthma and
had an inhaler for when the asthma acted up.I had bronchitis more times than I can remember but my symptoms seemed
to worsen about 2.5 years ago.I
remember I was sick with a cold and coughing a lot and noticed I was having a
lot of trouble breathing when my husband and I went to a park and just walking
was tough.I went to the doctors and was
told it was my asthma and I most likely had a sinus infection that had cleared
up on its own.So I continued taking my
inhaler and my symptoms seemed to get better. I started running and working
out, lost about 40 pounds and felt great.Fast forward to Christmas 2 years ago.I was in North Carolina in the mountains with my family and husband and
we went for a hike and I was having a lot of trouble with the smallest
hills.I chalked it up to the altitude
and my asthma acting up again.But my
symptoms didn’t seem to get better this time.I found myself trying to find the closest parking spots, knowing that
just the walk from my car to the store would be difficult.I let it go because I really believed I would
feel better eventually.I had a bad
cough from January until May of 2014.You would think I would have gone to the doctor but was seriously
convinced I had a really bad asthma flare up.

I am a nanny and my job requires
a lot of energy all day every day.I
would be at work and it would be really hard to do anything.I would walk up the stairs and need to sit
down immediately so I wouldn’t pass out, I would basically spend the day
sitting and making excuses to not chase the kids around.I honestly don’t even know how I got through
it and I don’t know how I managed to not pass out.When I got home I would sit down immediately
and remain in that position for the rest of the night.Needless to say, I gained that weight back
pretty quickly.It all came to a head
when a couple of other nannies and I decided to take the kids to the
Philadelphia zoo for the day.We parked
at the zoo lot which is about a 5 minute walk to the entrance of the zoo; no
hills. It was absolutely horrible.I had
to stop a couple of times on the way in to catch my breath and it hurt so bad
to even take a breath.I was gasping for
air with every step I took the entire day.It was so bad I told the other nannies that I thought something was
wrong.One of them said you mighthave walking pneumonia and she told me her
father had justgotten over that and he
had the same symptoms.I told my husband
and he said I had to go to the doctor.So I made a decision the next day to go to the urgent care after
work.

When I got there they took my blood
pressure, weight and placed the pulse ox on my finger.The tech who was doing all of this kind of
gasped and asked me if I was wearing thick nail polish and I told him
was
just wearing regular nail polish.So he
said let me do this again.And I looked
at the monitor and my oxygen level read at 78%I asked him if that was bad.He
said well you should be at 98-100% and he walked me over to the room and called
the doctor to come in immediately as they put oxygen to my face.They also took an xray of my chest.I sat there for a while until my oxygen went
up to 90% and said I need to go to the ER right away and they would call an
ambulance.I told them no that I would
have my husband come get me.I was
terrified.Once I got to the ER I was
pumped full of oxygen but it was so unstable that the doctors were seriously
concerned.They thought for sure I had a
pulmonary embolism and did all sorts of imaging and blood work which confirmed
there were clots in my pulmonary arteries and I had pneumonia. So I was in the ICU for several days and then
moved a step down to progressive care after a couple days but I was still
attached to oxygen.I was sent home
after about 10 days in the hospital but was still on oxygen and if I wasn’t
moving and not on oxygen my O2 levels would pretty much be at 92%.My mom came up from Mississippi to help and
be with me so my husband could return to work.On my ninth night home I was laying down and my dog was laying next to
me very concerned and wouldn’t leave my side.I was still coughing but this time I coughed up a lot of blood and then
I took my o2 levels and they were in the low 80’s while on oxygen.I told my mom and husband and I said I think
I might be getting another PE.So they
said lets go to the ER and as we were walking to the car I was so close to
passing out they had to catch me.We go
to the ER and had the same tests done and back to the ICU I went.After a few days in progressive care and no
improvement the doctor came to tell me that I was being transferred to Lehigh
Valley Hospital where I would most likely be getting a lung biopsy done because
they couldn’t figure out what was wrong with me and they didn’t have the
resources to do any further testing at my local hospital.It was at Lehigh where the wonderful ICU docs
figured out what was wrong with me.They
told me I had Chronic Thrombo Embolic Pulmonary Hypertension and that the clots
that are in my lungs had been there for so long that they had calcified and my
heart had been working so hard to get oxygen around that my right heart had
enlarged tremendously. They told me I
was really lucky because there was a surgery that could cure this and I might
be a candidate but that I would have to go to UCSD orTemple University Hospital for it which is in
Philadelphia.So the obvious choice was
for me to go to Temple.Because I was so
unstable I was sent there via ambulance and kept in their progressive care
there for about a week where they put me through a variety of tests.I had an amazing doctor, Dr. Paul Forfia,
come and talk to me and he told me I was a great candidate for the surgery and
I would have it the next day.When it
came time to sign all the necessary papers, the resident who came to tell me
about the surgery came right out and said exactly what the procedure entailed
and the risk factor.I had no idea the
surgery was an open heart surgery and all the craziness that went along with
Pulmonary Thrombo Endarderectomy.I
freaked out and could not stop hyperventilating.I said I needed a minute to think about all
of this.Dr. Forfia came in and agreed
that I needed time to process everything and it would be good for me to go home
and gain strength before the surgery.So
that’s what I did and I am so glad I did.I left the hospital at the end of June and scheduled my surgery for
September 22nd, 2014.I had
three months to research my amazing surgeon Dr. Yoshiya Toyoda, spend time with
my family and friends and mentally and physically prepare myself for the
biggest day of my life.I had that
surgery and despite one set back when fluid filled my lungs after leaving the
ICU, I got through it.They removed the
clots and cured me of my pulmonary hypertension. I was in the hospital for 9
days after surgery and left there with no oxygen and walking and able to
breathe.My heart is back to normal
size and really healthy.I have a new
outlook in life and consider this as my second life.I just recently had my first birthday and I
feel amazing.The asthma I had been told
I had, never really existed and I can take a deep breath like never
before.I exercise at least 5 times a
week, like really really workout.I lost
those 40 pounds (20 of it after the surgery from not eating and being bed
ridden) but the other 20 just from exercising and eating right.I am still working on being at my
healthiest.I owe my life to the
doctors at Lehigh Valley Hospital and my amazing doctors Dr. Paul Forfia and
his NP Fran Rogers and my surgeon Dr. Yoshiya Toyoda at Temple.Not only do they dedicate their life to
caring for patients with pulmonary hypertension but they cure those who are
able to get this incredible surgery.

This
past Saturday I had a major milestone in my post-surgery
life.My husband and I did the O2
Breathe walk to find a cure for Pulmonary Hypertension…at the Philadelphia
Zoo.I cried when I spent the entire day
there walking and able to enjoy the experience, I cried because of the guilt I
felt since I am cured, I cried for the people that have lost their lives to
this disease and I cried tears of joy because I know that this community will
one day find a cure as long as we keep coming together, spreading the word and
sharing our stories so people can become more familiar with this “invisible
disease”.

Friday, 9 October 2015

My
health journey started a long time ago. 25 years ago, to be exact. I
was three years old, and diagnosed with Stage 4 Embryonal
Rhabdomyosarcoma. To summarize: Tumor in my abdomen. 5% chance of
survival. The treatments I endured have long ago been deemed "inhumane,
and no longer practiced on humans." I received experimental amounts of
radiation, and chemotherapy. The doctors told my parents to expect long
term side effects of said treatments, but were unsure what they might
be.

Some
side effects were: intestinal issues, weak teeth, extreme fatigue,
infertility, and joint problems. I've lived my life in and out of
hospitals, and doctors offices. I've had to become very in-tune with how
my body is functioning.

Fast
forward to April, 2015. I developed a case of bronchitis that just
wouldn't go away, no matter the amount of antibiotics I took, or rest I
got. I noticed that my heart was beating hard all of the time, and I was
breathless walking from my living room to the bathroom. I couldn't
speak a full sentence without gasping for breath. After months of
different doctors, and tests, including a right heart cath, a new
diagnosis entered my life. June 5th, 2015: Idiopathic Pulmonary
Hypertension. My doctors can only assume it's from the radiation I got
as a child. At the time of diagnosis, I was told I was at Stage 3. I was
put on Sildenafil, Opsumit, and blood thinners within two days of my
diagnosis. I had to quit my job-I had been a nanny for 6 years-because I
couldn't even walk up a flight of stairs, let alone chase after kids.

I
felt my entire world crumble beneath me. The first few days after the
diagnosis, however, I felt relief. I was almost blissful. After months
of doctors telling me I was fine, there was nothing wrong, it was in my
head-one even told me that I should see a psychologist-it started to
mess with my mind. "Was I fine?" I thought? "Is this just how people
feel all the time, and I'm being whiny?" So to receive a diagnosis: I
was happy. I threw myself into learning about this disease, it's
outcome, the medications, the stories. But eventually google stops
giving you answers you didn't already know, and the dust settles. In the
weeks since I've been diagnosed, I've experienced sadness, anger,
guilt, frustration, and fear. Sometimes all on a daily basis.

These
days, I try my best to not panic or worry about the future. I spend my
days with my cat, and baking. I've had to learn to allow myself to not
rush projects, or cupcakes. But to take my time, rest often, rely on the
help that people want to give. I'm only a few months out of the
diagnosis phase, so I wholeheartedly believe that my health can only go
up from here, now that I have an amazing doctor, and medications. I use
oxygen only at night now, instead of 24/7, like at first.

I
joke that I've been given a "lemon" of a body. I feel as though the
insides of me are barely held together somedays. And there are days
where I think, it's impossible. It's impossible for one person to fight
so hard, to endure so much, to receive blow after blow. But usually
after a good nap, and an even better cry, and a hug from the world's
most amazing husband, I brush myself off, and tell myself that tomorrow is a new day.

Pulmonary Hypertension may have been a stumbling block for me this year, but it won't slow me down forever.

Wednesday, 7 October 2015

I
have been a pessimist my entire life. Some of my earliest memories are
of me worrying, mostly of problems that never came to fruition. I was
always a “glass half empty” kind of person, both figuratively and
literally. This, by the way, drives my boyfriend Spencer insane. I
always ask him to fill up my glass of water when it is half empty. Now
he refuses to fill up my glass until it is completely empty, which in
some weird way has taught me that a half empty glass of water is still
half full. (I know this because I used to chug my half empty glass of
water to get him to fill it up, which I do not recommend unless you like
choking on water and frequent bathroom trips while trying to watch the
Entourage movie.)

I am sure that being diagnosed with a disease
like Pulmonary Hypertension is difficult for both the optimists and
pessimists of the world. I say this because Pulmonary Hypertension is a
pessimist’s disease. Pulmonary Hypertension is something that can turn
an optimist into a pessimist, or allow a pessimist’s worries to thrive
like a germ cell in a Petri dish. The statistics about PH are not good.
Many of the people with PH that I have spoken to through this project
have only had these statistics affirmed by their doctors. With PH we
don’t get a 50% chance of remission with a certain kind of treatment.
Once we are diagnosed, we are often told that it is all down hill from
here. As you might know, this is one of the main reasons that I started
The PHight or Flight Project. Statistics are flawed; statistics do not
apply to everyone. Many people with PH are simply exceptional,
regardless of where they fit into that pie chart.

When I was
diagnosed, the statistics that I read about PH were not very optimistic. One of the
first articles that I read stated that people with PH have three years
to live, and will require a heart-lung-transplant (which also has
terrible statistics!) I was a wreck. When I finally saw a PH specialist
he told me I that had maybe 5 to 10 years to live. That was a lot better
than 3 years to live, but at age 25, living another 5 to 10 years
simply isn’t good enough. (Not so fun fact: I was 25 when I was
diagnosed, I am now 27.) Maybe I am spoiled for feeling this way. I have
been told I am a little spoiled… but I swear I just have good taste
(this statement is only half true) and I just like nice things!Being an optimist
is good for your health, so if you haven’t already, it is time to start
seeing your glass as being half full. Numerous
studies have concluded that optimists live longer. These studies have
also concluded that optimists heal quicker after surgery, survive longer
with cancer, and heart patients live longer.
Perhaps you don’t trust me because I admitted to being a reformed
pessimist, and now you want to do your own research. If so, a lot of
information is available for free with a simple Google search. (If you
use Bing as your search engine, I don’t trust you.)

Being an optimist is good for
your health regardless of your current situation, whether you have
PH or not. A study performed the Harvard School of Public Heart Health has found that having a positive attitude, such as self acceptance, is
linked to improved hearth health. This study concluded that people who are optimists had fewer heart problems. The University of Pittsburgh
found that optimists were more likely to live into old age, and were
less likely to die from all causes than cynics. Research has also shown
that optimists are less likely to get sick with a common cold. Their
bodies are also more efficient at fighting off infection during times
they feel optimist (opposed to times when they left less hopeful.)
Studies have also found that cancer patients with positive attitudes
tend to have better outcomes. In short, optimists expect the best to
happen and reap the rewards for their positive thinking. (I am sorry, I am not sourcing any of these studies. I am not being graded.)

As I
said before, PH is a pessimist’s disease. I understand that it can be
hard not to feel like the world is against you when the chances of
developing PH are so astronomically impossible. Statistically, you are
more likely to die in an asteroid apocalypse. Oh…maybe I shouldn’t have
said that. (Sorry pessimists, you’re probably safe from asteroids and
zombies.) As someone who grew up as a chronically pessimistic person, I
will admit that it is hard to change to way you think, but it isn’t
impossible. Look at all the benefits being an optimist can provide.
Becoming an optimist is free. It is also an oppurtnity that one cannot
afford not to at least try.

A Pessimist's Tips for Becoming Optimistic

If
you are still reading this, you might be slightly dubious of my tips
because I have mentioned that I was a pessimist before. I wanted to
highlight this because there is hope for everyone to become Optimist
Prime...or just a regular optimistic person. Whichever you prefer.

1. Keep a Gratitude Journal

Research
shows that grateful people experience less aches and pains, and report
feeling better. Keeping a gratitude journal can also improve your
long-term well being. It can also help improve your quality of sleep,
and help decrease systolic blood pressure. This exercise in gratitude
can also help improve relationships, and spirituality.

I recommend keeping a gratitude journal for at least a year. (However, you might
find it so beneficial you may want to continue practicing it.) I
know a year sounds like a big commitment, but chances are you can
squeeze 5 minutes in each day to do this. What worked best for me was
setting 5 minutes aside before bed to write what I was grateful for. I
recommend trying to write three gratitudes everyday before bed. You don't have to write a
full essay- just three small points. I did this for the first year
following my diagnosis, which was my most challenging year thus far in life.

It was very challenging to find things to be thankful at first, but
that is the idea of this exercise. This will encourage you to think
more positively. Not every gratitude has to be grand. On days where I struggled I was thankful for really simple things, like a good cup of tea.

2. Take Things 10 Seconds at a Time

Taking
painful or difficult things 10 seconds at a time is a revolutionary idea that I learned
from The Unbreakable Kimmy Schmidt. For those of you have never watched
the The Unbreakable Kimmy Schmidt, the show focuses around a young lady
who was kept in a bunker for 15 years with several other ladies after
being kidnapped by a man who refers to himself as the 'prophet.' The show
contains flashbacks which shows how Kimmy's spirit was unbreakable in
the bunker, and the ways she coped to life in the bunker.

In
one scene, it is revealed that the ladies in the bunker had to take
turns turning a crank in the bunker for 24/7 hours a days. Similar to a plot
in Lost, they had no idea why they had to turn the crank, but were told
horrible things would happen if they did not continue to turn the crank.
The crank was large and quite hard to turn, especially for someone of
Kimmy's small stature. To get herself through this process, she would
tell herself that she could stand anything for 10 seconds at a time.
"Then you just start another 10 seconds" Kimmy explains of continuing
this routine.

With PH, you will go
through challenges and face hard circumstances. Remember to take things
10 seconds at a time. You can stand anything for 10 seconds at a time.

If
you haven't watched The Unbreakable Kimmy Schmidt yet, you can binge
watch it on Netflix. It has everything you could want in a show. (Did I mention the show was co-created by Tina Fey?) Kimmy's
unbreakable spirit is almost contagious. I watched the entire first
season and didn't realize until after that this show wasn't just a
comedy. This story was about a young girl who was kidnapped, and
probably a victim of sexual abuse. It was a story about a
survivor. Her unwavering hope that she would escape kept her alive. Her
unbreakable spirit kept her optimistic.

3. Visualize the Things You Want

When
I was first diagnosed all that went through my head was the terrible
things the doctor's told me would eventually happen. I remember the
phrase "I am dying" running through my head for 24/7 for the first year
after diagnosis. It was horrible. Why was I focusing all my attention on
something that I didn't want to happen? Belief is power. I
believed that I was dying, there was no way my body could get better. I
had to stop my way of thinking. I had to let go of the negative
thoughts, and try to find optimistic thoughts.

Remember,
visualization is the idea that your mind can prepare your body for the
changes you want to happen. If you take one thing away from this, I hope
it is that you should not focus on the things you don't want to happen.
Instead, focus on what you do want to happen. You can incorporate
visualization into your meditation routine. You can also write down a
mantra or a goal and keep it somewhere you look everyday, like on your
desktop or tapped to the mirror where you get ready in the morning.
Reading what you want to happen and repeating it will help you
to visualize your optimistic thought. It will help you
focus on what you really want to happen, not what you are afraid will
happen.

This might be a little
hocus-pocus-new-age for some, which I understand. Instead, try not to
focus on what you don't want to happen. Focus on what you want to
happen. Don't focus your thoughts on fear, or worry. That will not help
you become an optimist, but trying to visualize or imagine things you
want to happen will. If you don't feel comfortable visualizing your
health, you could visualize small goals that you hope to complete. This
could be imagining a scrapbook you want to finish to doing a new yoga
move. A lot of athletes use visualization to prepare for the perfect
hole in one or goal, so there is some proof out there showing the power
of visualization, which is important for positive thinking.

4. It is Okay to be Sad

Being
an optimist doesn't mean that you cannot be sad. Part of being an optimist is recognizing your feelings. You will get sad and have a bad day. This is normal, and a part of life for everyone.

I know that I have a wave of emotions after a PH check up. I usually feel depressed for a few days. I try to acknowledge my feelings, but do not judge myself for feeling the way I do. I understand that what I am going through is incredibly challenging and hard. It wouldn't be natural to try to force happiness in these situations. I also think that in order to move on, I must go through the wave of emotions that accompanies a challenging day.

However, when these emotions no longer serve a purpose I try my best to let go of them. This means I have to stop replaying what the doctor said in my head, (or something else bad or negative) in my head over and over again. When I replay something in my head (or tell the story of something bad happening) over again I am reliving that experience. I keep putting myself back in that dangerous situation, even if it is just mentally.

To try and deal with sadness, or difficult emotions, you can always try writing down what happened, and how it made you feel. Read it a day later and see if you have an insight. Maybe you will be able to give yourself advice. You can also try to discuss your feelings with a good friend or family member. Because I know that PH check ups are difficult for me, I set up a 'self-care' plan. I set aside a few special items for me to enjoy when I get home. This includes having my favorite bath bomb from Lush to get all of the hospital cooties off of me, and then enjoying a cupcake that I have froze from my last visit to Kelly's saved especially for this occasion.

Do you have any tips on staying optimistic- or any tips on how you became an optimist? Please feel free to share in the comments.